I have decided that I must be suffering from Relapsing Remitting Advocacy Fatigue (if you've ever had cancer or been close to someone who has, you know that Fatigue is the F-Word of Cancer—it does NOT mean "tired" and is not mitigated by naps, juicing, yoga, positive thoughts or much of anything else).
Earlier this year, I had written about the costs of advocacy, and later, about the imbalance in doctor and patient advocate Twitter engagement at ASCO 2019 for Symplur's blog. Looking back, I see the fatigue has been building.
It takes energy to do the work we advocates do, and then it takes extra energy, especially after gains have been made, to have to fight to be seen, heard, respected, included, and even further energy to try to do so with some measure of grace.
Hello @DrN_CancerPCP. I see you're new to twitter. Welcome! A sure way to build community is to acknowledge those who educate and add to the body of knowledge. Yesterday's main #survonc contributions, beyond @subatomicdoc's came from @maryam_lustberg @DrAttai @stales & myself. 1/ https://t.co/Xt35K04T5i— Liza Bernstein (@itsthebunk) August 21, 2019
Two of us are are passionate patient advocate leaders (and who each happened to have had cancer three times). One of us is the first EVER to have co-founded a cancer-specific online community via a hashtag, namely #bcsm (see https://t.co/j6CUJo2jeN) — as far back as 2011. 2/— Liza Bernstein (@itsthebunk) August 21, 2019
One thing we all learned way back when was that the best way to help a twitter community grow is to find those who are already there, listen, acknowledge those who make contributions (imagine being a guest in someone's home), and... 3/— Liza Bernstein (@itsthebunk) August 21, 2019
... if you are trying to connect with patients and advocates as an MD on twitter, to sometimes go out of your way to include them in the conversation. That means, to acknowledge for oneself the built-in, unbalanced power dynamic. We do great things in partnership. 4/— Liza Bernstein (@itsthebunk) August 21, 2019
If this sounds harsh, please know that so many of us patient advocates are tired of being regularly erased, dismissed, diminished, looked over, and ignored for all the hard work we do, not for pay, but because we feel called to help based on what we've experienced. 5/— Liza Bernstein (@itsthebunk) August 21, 2019
We educate ourselves, we attend conferences, we read journal articles, we do peer-to-peer counseling, we help newly dx'd people get through the early panic, we help them communicate with their MDs, self advocate, get a handle on their new realities... 6/— Liza Bernstein (@itsthebunk) August 21, 2019
We reach out to our twitter networks to connect an offline person to a 2nd opinion, we connect patients who've been denied a tx by their insurer to our contacts inside the pharma companies to help them get expedited access to meds, we connect pts to clinical trials.... 7/— Liza Bernstein (@itsthebunk) August 21, 2019
Many of us are told by clinicians here that we help them give their patients better care. In breast cancer we fight the dominant Komen-driven narrative and the pink madness, and advocate for donation money to actually fund research into Metastatic disease. 8/— Liza Bernstein (@itsthebunk) August 21, 2019
In lung cancer we fight the smoking assumptions, help raise awareness about EGFR, ALK, ROS1 and other mutations..... We work across cancer dxs with our fellow advocates, we work across professional titles to collaborate for things to be better for all (including clinicians). 9/— Liza Bernstein (@itsthebunk) August 21, 2019
The best way to do that is to collaborate as equals within an unequal system. It might take a few extra minutes to hunt down all the replies, twitter handles, and quote tweets related to yours, but I assure you that we are a friendly bunch and all appreciate being included. 10/— Liza Bernstein (@itsthebunk) August 21, 2019
I know based on 9 years here on Twitter that that's how to build a community of colleagues, ignite working relationships, & deeply rewarding friendships. I end my rant/semi-tweetorial by wishing you well. I hope we can all work together to help cancer pts & their loved ones. FIN— Liza Bernstein (@itsthebunk) August 21, 2019
The irony of this thread is that hours beforehand, yesterday morning, I had had an invigorating and inspiring conversation with oncologist Gil Morgan, who had reached out to me to join his international OncoAlert network in a spirit of equal cooperation. Being dismissed and erased later on—even if due to "benign neglect"—was just another reminder of how much work we all still need to do.
Thank you, Gil, for inviting me and being open to actually talking with me so that I could have a better understanding of what it is you are doing with #OncoAlert. Patient Advocates and Oncology Professionals collaborating as equals is key! I am very excited!— Liza Bernstein (@itsthebunk) August 21, 2019
I might be in the throes of Advocacy Fatigue, but I am not stopping my work anytime soon. I know that the cure for it is to partner as equals (which is actually fun!).
In conclusion, I highly recommend this article, shared by my fellow advocate Erin Gilmer:
I think this article is useful for those coming into any movement/community. Esp sitting down and listening, recognizing all voices that came before, working with communities affected, acknowledging when they get it wrong. cc @DrN_CancerPCP https://t.co/V9aKyoAdgN— Erin Gilmer, esq. - Health is a Human Right (@GilmerHealthLaw) August 22, 2019
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